The Needs of Individuals with Developmental Disabilities and Autism in COVID-19

April 22, 2020

On Monday, representatives from Inclusion Alberta and Autism Society Alberta, almost all of whom are family members of persons with disabilities, met with Alberta’s Chief Medical Officer of Health, Dr. Deena Hinshaw, and the Minister of Community and Social Services, Rajan Sawhney, to discuss the needs of individuals with developmental disabilities and autism and their families. The meeting came as a result of sustained and continuing advocacy by both organizations to have the Alberta Government better understand what is needed in the context of the COVID-19 pandemic. Both organizations were also seeking assurances that families would be actively engaged in the future development of policies and actions relative to COVID-19 so that the interests of and impact on individuals with disabilities and their families would be considered. Inclusion Alberta and Autism Society Alberta reiterated that when organizations such as ours are involved in the development of policies and actions, from the onset, individuals with disabilities are far less vulnerable.

Dr. Hinshaw and Minister Sawhney listened attentively to the families who shared personal stories of how they were trying to ensure the safety of their family members, even without coordinated action from the government, and their continuing and ever present fear should their family member, or they, contract COVID-19, or for those still requiring staff, what would happen if their staff became ill. They also shared their overwhelming sense of terror should a family member with disabilities have to be hospitalized and families or staff not be allowed to be present to support them, given past experiences with medical treatment and the inability of many individuals to communicate in a way familiar to healthcare staff, be understood or understand what was happening to them.

The following issues were also raised by both organizations: the provision of Protective Personal Equipment (PPE) for families, individuals and staff; the need for healthcare protocols for individuals living with families, in their own homes or small group living arrangements, such as the provision for staff to be able to work in more than one location; and assurances that should Triage Protocols be implemented, individuals with disabilities will not be discriminated against and denied treatments that would be provided to non-disabled individuals.

Dr. Hinshaw committed to working with Alberta Health and Alberta Health Services to address the need for protocols relevant to individuals living with families, in their own homes and small group living arrangements, and when someone with a developmental disability or autism requires hospitalization and support from family or staff. Dr. Hinshaw stated she was committed to seeing Albertans with disabilities being treated as equally-valued Albertans.

Minister Sawhney reiterated that plans were already underway to distribute PPE to families and that this would be implemented very shortly, with support of organizations such as Inclusion Alberta. She also committed to continue to work with Inclusion Alberta and Autism Society Alberta to address ongoing needs and issues relative to COVID-19.

Both organizations expressed their appreciation for the commitments from Minister Sawhney and Dr. Hinshaw and we remain committed to continuing to advocate on behalf of individuals with developmental disabilities and autism, their families and those who support them.